Getting to grips with “Lived Experience Leadership”

Photo: Getting to grips with “Lived Experience Leadership”

Lived Experience Leadership – what does it really mean?

DIY Leaders have been getting to grips with “Lived Experience Leadership” (Lex Leadership).

The Lived Experience Leaders Programme

DIY Theatre Company is one of 48 organisations taking part in The National Lottery Community Fund’s Lived Experience Leaders programme. Running from 2021 to 22, the programme is a fantastic opportunity for us to contribute our experiences of leadership as people with learning disabilities and to link up with other LEx Leaders.

We have already explored leadership in a digital environment. When we were still meeting on Zoom, DIY’s Friday Leadership Group created a film called “Enjoy your Time Online” to support people with learning disabilities to give digital a go.

This is what Lindsey Brook (Engagement and Development Officer, NHS Salford Clinical Commissioning Group) said about our digital inclusion films:

“The films were brilliant – they were brilliant. What I thought was really good was that they were a really genuine representation of peoples’ journey to get online.

The films didn’t feature only people that would have found it easy. There were some people who would have had their phones and would have been reasonably savvy already but there were people who would never have been on a computer before.

Firstly you did something about digital exclusion, where so many organisations that could have done something about it didn’t.  Secondly, it’s not something that’s finished – it’s going to be ongoing. You’re going to keep on learning new ways to use technology and supporting new people to find ways to use technology. In terms of Social Impact that’s a long term project and it’s got long term value because it’s got applications for so many areas of peoples’ lives.”

What does lived experience mean to us as individuals and as a group?

Now that we are meeting back face to face our Friday Leadership and Young Leaders groups have been thinking about and discussing LEx Leadership. What does lived experience mean to us as individuals and as a group? How can it help us to support other people with learning disabilities? How can it help us make links with other individuals and organisations who are also exploring Lived Experience Leadership?

Getting back to basics

When our members started meeting up together face to face in Autumn 2021 we realised that we needed to go back to basics in lots of different ways. This included our understanding of what Lived Experience Leadership is. What does it means to us as individuals and as a company? What can we learn that will help us to become better leaders?

Our Young Leaders have been exploring different kinds of leadership and why it’s important for different ways of doing leadership to be seen and valued. We have been doing this using drama activities and discussion and we have created images to go alongside messages we think are important.

During December some of these statements and images are being posted on DIY’s Social Media. We hope this will raise awareness of the issues we have been exploring. We’ll be exploring how to share our experiences more widely next year.

A new film in the making

Meanwhile, our Friday Leadership Group have had some very interesting and important discussions about lived experience and what it means to us. Working with Hilary Easter-Jones, our associate artist film-maker, we are creating a film to share what we want to say. We plan to have our new film ready in early in 2022, but you can watch the trailer now.

DIY Exploring LEx Leadership – Trailer from DIY Theatre Company on Vimeo.

So what have DIY Leaders been saying about Lived Experience Leadership?

Well, we’ve really been going back to basics to explore some of the language and definitions used in Lived Experience Leadership.

We’ve been thinking about our own life experiences, something we have experienced ourselves, that stays with us:

“I have lived experience of living on my own and having my own money.”

“I think a lot about access because I use a wheelchair.”

“I’ve got lived experience of never getting a paid job.”

We’ve been exploring what we mean by “Social Issues”

  • We thought about what that means, it’s something unfair – like not letting everyone have a voice and racism.
  • Examples of social issues we have experienced include “not having good disabled toilets” and “not being listened to by a social worker”.
  • We believe a social issue is a people problem!

We’ve been discussing how these experiences help us to be better leaders

“Me leading with a disability shows that people with disabilities can achieve.”

“A lot of people with disabilities don’t have the chance to do things. I tell people they can do stretches in their own way so that they feel comfortable – everyone helps each other to learn new skills”

“We’ve got disabilities so we can relate to stories people without disabilities might not relate to”

“We think about safe spaces so everyone is welcome and we aren’t discriminating”

“We think about how to adapt games to disabilities even if we don’t have those disabilities”

“People without disabilities might not understand the fear we feel.”

“I think about people’s needs because I have different needs.”

“We think about peoples’ safety because we understand that some people cannot get out like people without disabilities”

We’ve even created our own Acrostic Poem about Leadership:

L is for Laugh – it’s good to have a laugh and fun when leading

E is for Eye Contact – we give eye contact to people we are helping

A is for Accessible. It’s also for Awesome and Amazing which is what we think of leadership.

D is for Dream Job, Drama and Demonstrate. We are leaders in drama – it’s important to demonstrate games for people who are less verbal.

E is for Enthusiastic. It’s important for us to be enthusiastic so people taking part in a workshop are also enthusiastic.

R is for Relying on each-other and Respect. We help each other to lead and we respect other people in the room.

S is for Safe. We need to make sure everyone feels safe when we are leading.

H is for Helping and for Happy. Leadership is about helping others and leadership makes us happy.

I is for Integration. That means making sure everyone is involved and everyone is ok.

P is for Partnership. Because sharing leadership is partnership.


DIY is committed to improving our approaches to developing leadership and the ways we talk about leadership within our organisation and with others. We look forward to continuing our conversations and explorations in the New Year and to making links with others who are interested in exploring and developing Lived Experience Leadership.

DIY would like to thank the National Lottery Community Fund
The National Lottery Community Fund logo